Many thanks for the kind welcome and allowing non PALS to participate in the forum. I am a close friend a person who has recently received a diagnosis of ALS.
The main reseason I joined the forum was to see if any members had shared any experience or are willing to share their opinions of the possibility of slowing symptom progression with a high consumption of healthy fat, as opposed to a standard keto diet, which can (and ususally does) contain high amounts of saturated fat and emlinates/drastically reduces carbs.
I am aware the facts and data show that a keto diet is not a cure for ALS and is
not proven to slow progression. Also there are many people who were on a keto diet and went on to acquire ALS.
Depsite all of the above, there seem to be anectodally much interest in keto + ALS. Perhaps there is a kernal of something fundamentally helpful for PALs with regards to keto?
Topic of interest:
Healthy fats/low saturated fats + lots of good carbohydrates as a diet protocol for PALs
One can imagine that if it (eventually) turns out that it is an individual's (specific) metabolism of saturated fat is the key factor in TDP43-related changes, then of course "a standard" keto diet is hardly going to help.
Plus, there seems to be much evidence that increasing glucose is helpful, so why eliminate carbs?
Is a problem with fat metabolism potentially causative of ALS?
There seem to be plenty of studies detailing that l
ipid metabolic pathways converge in motor neuron degenerative diseases.
Since I am a firm believer in that the obstacle will show us the way, or
The impediment to action advances action. What stands in the way becomes the way.
- Marcus Aurelius
it seems pretty clear while the world waits for a cure, specific metabolic changes (including the metabolism of fat) at an individual patient level need can and should be addressed. How about looking at treating the patient at as a whole and looking at what else is going on besides the symptom of muscle deterioration?
Any PALS using a healthy liver diet?
My friend has for the past twenty years has had major trouble digesting fatty meals. He has seen loads of doctors, but basically nothing was actually done about this issue. I would guess that he has a fatty liver and gall bladder issues, but since I am not a doctor, I am refraining from offering unsolicted advice.
In terms of ALS, my friend was prescribed Riluzole and to eat a high calorie diet (include both fat and carbs), and was not recommended to take any supplements.
He is a runner and plays a lot of sports. He has been told to not push himself too hard, but overall there is no evidence that giving up sport will confer any benefit in terms of slowing ALS.
I can't help but think that for my friend with the fat digestion issues, there is benefit in at leat trying to eliminate saturated fat, and as I am conscious that I am not an expert, I wanted to hear what people with ALS have to say on the topic.
My learning thus far:
Higher
cholesterol levels may be protective
Using statins is discouraged for PALS
Overuse of muscles is associated with ALS, but it is doubtful it is causative (I am guessing latic acid only serves to further damage muscles, but muscle overuse itself is not a causitive, only a contributory agent)
A
high sugar diet may delay symptom progression. In fact, in my opinion the research is pointing towards that
Glycolysis upregulation is neuroprotective as a compensatory mechanism in ALS. This jives with what we know about the human body and the extraordinary lengths it will go to in order To maintain safe pH Levels. Your body will do whatever it takes to maintain safe pH levels. Two common examples are: it will rob calcium from the bones if it has to (resulting in osteoporosis), and overwork the kidneys to flush out glucose as necessary (may result in kidney disease).
Fatty liver is common in PALs (but I suspect is not caustative, but rather a result of improper fat metabolism over a number of years. )
Mildl
obesity is desirable for PALs.
My good will and best intentions are sent to you all.
Thank you so much for your comment! I am in camp that considers olive oil, avocado oil, nuts and seeds as healthy fats. I am looking into pancreatic enzymes and probiotics as ways to increase fat absorption.